Has anybody had the capillary loops c... - Scleroderma & Ray...
Has anybody had the capillary loops checked under a microscope
Yes I have had my nailfold capillary's checked twice.
Yes that's the 1 I had on Tuesday he said I had plenty of activity going on as I could see. And vessels was ready to burst. I get constant pain in my full arm which limits mw to going next to nothing. Do you get it or is urs just your hand. I can't lie on the side which my raynauds affects as its so painful.
Yes and they told me I had scleroderma ...... and that was it until I found the Raynards & Scleroderma Association who explained what it meant (or could mean long term)
that was 20+ years ago , never had the test repeated. Should I have done?
Not sure. Its all new to me. I was told in Feb this year I have raynauds. That was it. No test or anything. But coz its got worse I went bk to gp who referred me to rhumatologist. (Can't spell sorry). Had the nail fold test on Tues. So waiting for results now. Although he told me there was plenty of activity going on as I can see. And vessels are ready to burst so im obviously doing to much. But being my left hand and im left handed. What am I meant to do.
I'm left handed too.(dont know if there is a conection) but when you get the test results dont be afraid to ask what they mean and what should happen next.
Then come back and tell us cos we've all been there before and often know more about the day to day implications than a doctor who has just learnt about it second hand (no pun intended)
I will do defo thanks. How long is it usually be4 U get the results bk or the gp gets them.
sorry I cant remember it was years ago!
usuallt hospital tests take abot 2 weeks to get back to my GP and I have to make an appointment to be given them.
I had the test done 5 years ago and it was clear then had it repeated last October and it showed damage - the doctor doing the test explained it all to me at the time. Which was better than waiting for results 
I dont have any other symptoms (other than Raynauds) so at the moment they say they will just be checking and watching more carefully to make sure they pick up any condition early. I live in Spain (because of the Raynauds) and this has really helped.
Yes I went to Spain twice this year and was pain free both times. Gutted wish I lived there. The pain I suffer in my arm is getting worse and unbareable. Just hoping that the nefedipine help alot.
I cannot take any medication for Raynauds - due to a unrelated heart problem - hence living in Spain is the only course of treatment, sadly it wasnt on the NHS !
Sorry to hear U can't take any medication to treat it. If U don't mind me asking. What heart problem do U have. Only askin as I have congestive heart failure. So im limited as to what other tablets im allowed to take.
I have malignant vasovagal syncopy - so with no notice or warning my heart rate and BP drop suddenly then stop, thankfully they automatically restart
I had the test, and the 'cold challenge' test, earlier this year after asking my GP if I could be referred to Salford Royal - where there are specialists in scleroderma, instead of my local hospital, where there isn't a specialist anymore. I was able to see the screen as my capillaroscopy was being done - it was very interesting. As the very nice man who did the test said, mine are unusual in that the pattern of the capillaries is very different in each hand - normally they are very similar.
My understanding is that the shape of capillaries gives an indication of how severe your Raynauds is. Such changes also often take place in people with systemic rheumatic diseases especially scleroderma. I have the limited type of scleroderma (which used to be called CREST) and secondary Raynauds. In case you don't know, if you've got Raynauds with no other disease then it is called primary Raynauds. If you have primary Raynauds and then develop a disease such as scleroderma your Raynauds will then be called secondary.
The cold challenge test was fascinating, I was able to watch the thermographic image of my hands warming up after being plunged into cold water for 1 minute (might have been 2 can't remember). My left hand didn't warm up after 15 mins so I had to stay for another 15 mins while they warmed the room to 30 degrees C. My left hand still wasn't totally warmed then.
As you might guess, my left hand is my worst hand but I am right handed. I too get pain in my left arm but not constantly. For many years I have had pain deep in the upper arm from time to time and did sometimes wonder if I was having a heart attack!! After not ending up in hospital after several attacks though I decided that it's 'just' the Raynauds.
Interestingly I've just had (as have all scleroderma patients at the Royal) an invitation to take part in a research study the hospital is doing. They are going to use nailfold capillaroscopy and dermoscopy (which uses a magnifying lense attached to a digital camera) on each volunteer and will compare the results to see which works best. They hope to find out whether one (or both) tests can provide measurable information about changes to the capillaries over time. I'll take part in any study if it might help someone sometime so I have volunteered. The only thing I'm not looking forward is that on the day I cannot drink caffeine for 4 hours before the tests and, worse, can't use handcream!! I hate how my hands feel if I don't put handcream on them after every wash. But it's all in a good cause.
Or thanks for the reply. It helps me lots. I am under Salford royal myself. And only had my 1st test as I say on the 2nd Oct 12. And yes its amazing looking on the screen to see the capillary loops. He shown me afew which was ready to burst. Said I must be doing to much or have knocked my fingers. But I told him im left handed but still im limited to using it as my hand seizes for a while when do anything. For my next appointment through now to see dr Jones rheumatologist for 26th Nov. So il no then hopefully which it is. When is it ur doing research study. IV not heard anything about it but maybe this is because iv only just had this test.
I've never heard that knocking your fingers will burst capillaries but, hey, I'm not a doctor! Please let us know what Dr Jones says - have you had blood tests done there yet? Just wondered if Dr Jones will have some results of them too. I've got my first appointment for the research next Friday (19th) you will probably get an invite letter soon, depending on what Dr J says. I have also got my consultants appointment on the 19th and will be having first test in a nutritional study (that's just for patients with Scleroderma). Pity we're missing each other by a week - it would have been good to meet up!
Yes iv had blood test done and was sent a copy of the results but don't understand them.but going to make Ann appointment with my gp for next werk and hopin she will have my results for bloods and nail folds. As I say im clueless to raynauds but I no the vessels was big towards my fingers on my right hand and few he pointed out was like tear shape. There the 1s he said R ready to burst.
Hi
I too have limited scleroderma and had the capillary test done about 5 years ago - i thought the flattened tips looked like tadpoles and I now refer to the tadpoles wriggling when I get a flare up especially if I've knocked my fingers and it can be quite painful. I try and protect them as much as I can and should have shares in plaster companies!
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